Checked with Dr. Scott Wolfe- Hospital for Special Surgeries:
QUESTIONS
How much experience do you have with brachial plexus and trauma injuries in adults?
Very extensive, about 10-15 years
How many total BRACHIAL PLEXUS OPERATIONS IN ADULTS are done per week and per year, and how many have been done in total.
Performs about 10-12/year.
Do I qualify for surgery?
Yes, there’s a type of surgery that might work for me especially since its 9 months post accident, which is over the 6 month mark. Usually surgeries are performed 2-6 months post accident, these have a higher chance to succeed. But there is an alternative surgery that might work.
If yes, why? If no, why?
Nerve transfer not recommended b/c I’m at risk of muscle atrophy going on 9 months post accident. After 6 months, this surgery has less than a 50% chance of success.
Yes- b/c there are surgeries (muscle transplant & shoulder fusion) that can be performed at anytime long after the 6 month mark that have a good chance of success (70-80%).
If yes- what are my options?
Muscle transplant- where they would take a muscle from your inner thigh (above your knee) & transplant the muscle along with the nerves to the bicep in my arm. This would allow me to bend my elbow. The strength of the elbow will be fairly weak (able to lift 2-3 lbs although a few patients were able to lift 10 lbs). After I get elbow movement back, I can also undergo shoulder fusion which fuses the shoulder to the scapula. This way, anytime I move my scapula, I will also be able to move my shoulder a bit. It won’t be much movement, just about a few inches front, back & to the side.
I understand that there is a higher success rate when surgery is performed 2-6 months post accident. Is this correct? How much of a disadvantage does it make for me being 9 months post accident?
Yes that’s correct. The success rate drops from 70% to less than 50% when getting a nerve transfer/graft done. If I do the muscle transplant, I have a 70%chance of regaining elbow movement.
Is there a difference between females getting this surgery as opposed to males?
No
Is age a factor? Weight? Physical condition?
Yes, but my age is fine. A child under 5 years old would have a better chance of success but the ages of 5-35 generally have the same results
What about regaining finger movement?
Slim to no chance of regaining finger movement
Re: intercosal nerve transfer from ribs to arm- What nerves would be reinervated? What nerves would be deinervated & how will the area be affected (numbness, pain, soreness- will it be permanent or get better)?
Does not recommend this b/c it’s been 9 months post accident.
If surgery is successful, how much function would be expected to return? What is the percentage of return expected? Length of time function returns?
Muscle transplant- 70-80% chance to regain elbow movement.
Ususally takes a year to a year and a half for function to return
How risky are the options?
Not very risky although the muscle transplant is a lot more complex than the nerve graft. 10% risk to muscle, nerve, vessel.
What are the disadvantages? Short term? Long term?
Scarring, arm (bicep) & leg (above knee).
If intercostals nerve transfer, numbness on side of breast & around nipple.
What are the advantages?
70-80% chance of success, close to 90degree elbow flexion. 30% chance will need second surgery to tighten muscle (for better flexion). Shoulder fusion also needed for shoulder movement.
Will it take a "series" of operations or done “all at once”?
Most likely more than one
What are the side effects of the surgery?
Soreness to leg, long, complex surgery
Will I need to be on meds during, before or after? If so, what kinds and how long?
Pain meds for post surgery
How long is the surgery?
8-10 hours
When under anesthesia, will I need to be intubated?
Yes, long surgery
What are the statistics? Percentage of people who got better/got worse?
70% chance of sucess
What is the recovery process, how long?
1 year to a year & a half recovery, intense rehab theraphy
What does the evaluating team consists of? Is it a multidisciplinary approach with specialists from many relevant fields, or does it consist only of surgeons or only of medical doctors? Team of doctors
Have Aetna HMO- HSS is participating but not Dr. Wolfe or team of doctors. How much will the surgery cost? Hospital stay? Rehab? Inquire all expenses, payment plans
If Aetna HMO does not have an equivalent (needs to be able to show equivalent results) or else they need to cover an out of network doctor (Dr Wolfe). Check to see what coverage Dr. Houseman takes -brachial surgery- Mt Sanai
Ø Will need to run nerve tests, EMG, CT Myelogram
Ø He will also check in with my surgeon at Weshchester Medical, Dr. Asprinio, to get more info re: my injuries
I REALLY LIKE THIS DOCTOR! HE SPENT ABOUT AN HOUR AND A HALF WITH US. I FEEL VERY COMFORTABLE WITH HIM. HE IS VERY KNOWLEDGEABLE. HIS CURRICULAM IS VERY IMPRESSIVE & HE IS HIGHLY RECOMMENDED.
I'm seeing another specialist on Friday (Dr. Price but he works mainly with pediatrics. I'll be getting a fourth opinion on March 8th with Dr. Nath. Will keep you all posted....
Need help
Re: Need help
Its true Onepaw, everything seems to be work in progress so its all a chance, we either try it or not. I'm leaning more on trying the surgery if there's a chance I'll get movement back. Something is better than nothing...we'll see what happens. Luckily, I dont have much pain which is uncommon I hear for most people who have tbpi with root avulsions. Either way, I'm trying to be hopeful...
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Need help
thanks for the info Princess, again!
So this guy only does about one adult surgery a month.....who IS doing all the tbpi surgery in the US? When I research for papers written specifically about tbpi by US surgeons, Dr Kline comes up a lot, but I don't know how many people from here have used him. A lot of the obpi guys do a few adults as well, but it would be worth trying to find out who does the most adult tbpi surgery. If you find this out (or anyone else knows) please let me know. From years of reading posts here and elsewhere, I've noted that obpi docs are often far more optimistic in saying how long after injury surgery can be done and sometimes offer increased odds of success, probably based on their work with babies, so be aware of this as those results may not apply to you. Dr Wolf seems to have been pretty realistic in this respect.
There used to be an 'Ask A Doctor' section here on this site with responses from Dr Nath and Dr Price. Dr Price was the one who usually answered tbpi questions, so it will be interesting to see if he carried on that interest in tbpi. Dr Nath specialises in obpi but has also done some adults, do they all just 'dabble' in tbpi or is there a MAIN MAN (or woman!) for tbpi? This never used to be an issue but with docs now competing for patients and 'selling' their own facilities to the max it would be nice to find out who does the majority of tbpi work over there. Maybe ask the next doctor...
I'm interested that Dr Wolfe says the muscle transfers work best on under 5s, I've read this before from many other specialists, but Prof Birch in London actually finds these surgeries work better in children over 7, and very well indeed in adults (something to do with retraining the brain). I'm not saying Dr Wolf is wrong, he is obviously speaking from his own experience, just be aware opinions differ in this (as in just about everything lolol) and be hopeful for your outcome, it's bound to help!
Thanks again Princess, looking forward to the next instalment in your personal odyssey(sp?)
So this guy only does about one adult surgery a month.....who IS doing all the tbpi surgery in the US? When I research for papers written specifically about tbpi by US surgeons, Dr Kline comes up a lot, but I don't know how many people from here have used him. A lot of the obpi guys do a few adults as well, but it would be worth trying to find out who does the most adult tbpi surgery. If you find this out (or anyone else knows) please let me know. From years of reading posts here and elsewhere, I've noted that obpi docs are often far more optimistic in saying how long after injury surgery can be done and sometimes offer increased odds of success, probably based on their work with babies, so be aware of this as those results may not apply to you. Dr Wolf seems to have been pretty realistic in this respect.
There used to be an 'Ask A Doctor' section here on this site with responses from Dr Nath and Dr Price. Dr Price was the one who usually answered tbpi questions, so it will be interesting to see if he carried on that interest in tbpi. Dr Nath specialises in obpi but has also done some adults, do they all just 'dabble' in tbpi or is there a MAIN MAN (or woman!) for tbpi? This never used to be an issue but with docs now competing for patients and 'selling' their own facilities to the max it would be nice to find out who does the majority of tbpi work over there. Maybe ask the next doctor...
I'm interested that Dr Wolfe says the muscle transfers work best on under 5s, I've read this before from many other specialists, but Prof Birch in London actually finds these surgeries work better in children over 7, and very well indeed in adults (something to do with retraining the brain). I'm not saying Dr Wolf is wrong, he is obviously speaking from his own experience, just be aware opinions differ in this (as in just about everything lolol) and be hopeful for your outcome, it's bound to help!
Thanks again Princess, looking forward to the next instalment in your personal odyssey(sp?)
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Need help
onepaw-great words of wisdom. I made choices early in my recovery and I live with them daily. I have no regrets whatsoever, and that's the most important thing. :0) It's like sarmstrong said in that earlier post, the tbpi is now part of my identity, I truly can't imagine life any other way now.
Re: Need help
Jenny- I'm not quite sure how to go about finding out which doctor handles most adult tbpi but I'd love to find out. If anyone knows how I can go about it, please pass this info on. I'll be more than happy to check it out. I know that we have a right to know the doctors track record so I'm going to check them out & see what I find. When I saw Dr Wolfe, he mentioned that not many doctors specialize in this kind of injury & that he's travelled the world studying, learning & even training on this injury. I feel confidant in him & like that he works mainly with adults b/c thats exactly what I need. I'm still going to get more opinions so I know all my options. I dont want to limit myself in any way. This is way to important!! You said you truly cant imagine yourself any other way now...how long did it take for you to be OK with your injury & what helped you be Ok with it? Its been 9 months for me & although I can identify with tbpi, its such a painful reality...
Re: Need help
What does PHYSIO mean? I hear about this a lot & am unsure of what it is, maybe a type of therapy? Anyone??
Re: Need help
Princess,
You might want to learn about the phonomenal surgical team of 3 at the Mayo Clinic in Rochester, MN. These guys are miracle workers, they just did surgery on my stepson, John, this past Friday (10 hours). When they went in, they found all nerve roots avulsed and very severe scar tissue around the brachial plexus adjacent to the spinal column. So, they had nothing to work with in the area of traditional nerve repair/grafting. They did Stage 1 of the two stage free muscle transfer that Dr. Wolfe discussed with you, they also performed a C7 Cross Lateral nerve transfer (borrowing nerves from the "good side") and in addition used the phrenic nerve to aid in muscle firing (this procedure is done by very few specialists in the States, in fact it was a first at Mayo, but done routinely in the Far East).
We've become pretty familiar with what most of the BPI specialists are doing in this country and it would be hard to find someone that has the skills and knowledge to duplicate what they're doing. Not that there aren't a number of fantastic and dedicated folks out there.
The other factor is that the whole approach to patient care at the Mayo Clinic and at Saint Mary's Hospital is unbelievable. I've never seen anything like it.
If you would contact me directly via e-mail, I'll give you more details, specifically about a young lady that had similar surgery up there a week ago today. She, also, was involved in a motorcycle accident last June. We visited with her this past Saturday and she should be discharged today.
If I may be bold enough to give you one piece of advice, it would be to get moving toward surgery as quickly as possible. Time is a precious commodity in determining success in this area. I wish you the best of luck!
Gene
You might want to learn about the phonomenal surgical team of 3 at the Mayo Clinic in Rochester, MN. These guys are miracle workers, they just did surgery on my stepson, John, this past Friday (10 hours). When they went in, they found all nerve roots avulsed and very severe scar tissue around the brachial plexus adjacent to the spinal column. So, they had nothing to work with in the area of traditional nerve repair/grafting. They did Stage 1 of the two stage free muscle transfer that Dr. Wolfe discussed with you, they also performed a C7 Cross Lateral nerve transfer (borrowing nerves from the "good side") and in addition used the phrenic nerve to aid in muscle firing (this procedure is done by very few specialists in the States, in fact it was a first at Mayo, but done routinely in the Far East).
We've become pretty familiar with what most of the BPI specialists are doing in this country and it would be hard to find someone that has the skills and knowledge to duplicate what they're doing. Not that there aren't a number of fantastic and dedicated folks out there.
The other factor is that the whole approach to patient care at the Mayo Clinic and at Saint Mary's Hospital is unbelievable. I've never seen anything like it.
If you would contact me directly via e-mail, I'll give you more details, specifically about a young lady that had similar surgery up there a week ago today. She, also, was involved in a motorcycle accident last June. We visited with her this past Saturday and she should be discharged today.
If I may be bold enough to give you one piece of advice, it would be to get moving toward surgery as quickly as possible. Time is a precious commodity in determining success in this area. I wish you the best of luck!
Gene
-
sarmstrong806
- Posts: 18
- Joined: Wed Feb 05, 2003 12:32 am
Re: Need help
Princess-
I forgot to answer some of your questions in that earlier post. The Serul grafts were 7 months post accident, done by Dr. Nath at TCH. I don't remember what they said percentages were for return, but I had no imporovement. I would do all the surgery I've had over again, and in fact im getting ready to have 3 or 4 more in the coming years. It may sound weird, but I look forward to surgery, its really not as bad when you consider the goal. Alot of the time medecine in general is a big "what if" , but alot of times the reult is worth the risk. At this point in my life, It's not the loss of function that really bothers me, but wearing the sling. If I could just get to where I could hold it in a natural posistion that would be fine. I've been around these boards before, but posting here with ya'll has really been a release for me, also I think my roomate is sick of hearing about it.
I forgot to answer some of your questions in that earlier post. The Serul grafts were 7 months post accident, done by Dr. Nath at TCH. I don't remember what they said percentages were for return, but I had no imporovement. I would do all the surgery I've had over again, and in fact im getting ready to have 3 or 4 more in the coming years. It may sound weird, but I look forward to surgery, its really not as bad when you consider the goal. Alot of the time medecine in general is a big "what if" , but alot of times the reult is worth the risk. At this point in my life, It's not the loss of function that really bothers me, but wearing the sling. If I could just get to where I could hold it in a natural posistion that would be fine. I've been around these boards before, but posting here with ya'll has really been a release for me, also I think my roomate is sick of hearing about it.
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Need help
Hi Princess, physio is what Brits call PT, and it's very important in the early months and years of a tbpi to prevent muscle contractures and joint stiffening. A physio is also what we call the person who does the PT with you. So, you have physiotherapy with a physiotherapist. If it's done religiously and regularly you can avoid further reconstructive surgery and help function return-all the surgery in the world will not help much if physio is not given a high priority. If it isn't done and contractures develop (problems raising the affected arm above the head, flexing fingers and straightening elbow) any return of function you get may be compromised by the reduced range of motion (ROM). It's such an important part of tbpi rehabilitation that the physio or PT should work closely with your specialist.
Jen nz
I had to attend 3 sessions of PT or physio every week for 2 years after my injury, each lasting 2 hours. I also found that my elbow got a lot more flexible when I weaned myself off the sling-which isn't easy to do, it's scary letting that flail arm dangle! My physio MADE me ditch the sling, she said sling dependency is a real problem for flail arm tbpi. You need to do this with PT and specialist supervision, in case you have shoulder issues (some tbpi have persistent dislocations due to muscle wastage in the shoulder). Today my elbow is almost straight when hanging down, if I'd remained 'sling dependent' I would have had a bend in my arm that makes things like running and just looking 'normal' so much harder.
Jen nz
I had to attend 3 sessions of PT or physio every week for 2 years after my injury, each lasting 2 hours. I also found that my elbow got a lot more flexible when I weaned myself off the sling-which isn't easy to do, it's scary letting that flail arm dangle! My physio MADE me ditch the sling, she said sling dependency is a real problem for flail arm tbpi. You need to do this with PT and specialist supervision, in case you have shoulder issues (some tbpi have persistent dislocations due to muscle wastage in the shoulder). Today my elbow is almost straight when hanging down, if I'd remained 'sling dependent' I would have had a bend in my arm that makes things like running and just looking 'normal' so much harder.
Re: Need help
Thanks all. I definitely feel the same way you guys do about the sling. I hate it! If surgery can help my arm at least hold itself & no longer need a sling then thats an excellent stsrt. I'm not expecting much full return of function but some would be better than nothing. I go to PT 5 days a week but not only for my flail arm but for my neck, scapula & right wrist. My mom maintains my left arm very well to avoid contractures & stiffness. The doctors were impressed that my arm is kept in such good condition. I owe it mostly to mommy. My fingers gets stiff the most. The last Dr. also said that the sublexation in my arm is very minimal & he believes something is working there, muscles mainly b/c atrophy seems to be little, which is great news. Ugh, I need to take a deep breathe & hope for the best. This site has really given me tons of knowledge as well as wonderful support. You are all fabulous!!